Physiotherapy & Occuaptional Therapy in PSP and CBD. Fiona Lindop and Clare Johnson Specialist Therapists Derby, UK

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1 Physiotherapy & Occuaptional Therapy in PSP and CBD Fiona Lindop and Clare Johnson Specialist Therapists Derby, UK

2 Introduction Review stages of PSP and CBD Identify therapy interventions Identify Red Flags Physiotherapy specifics Occupational Therapy specifics Case Study Resources Before we begin.. Which disciplines are represented? What experience is represented?

3 The Patient is at the Centre of Multidisciplinary Management Multidisciplinary Model

4 Early Stage Symptoms in PSP Impaired balance & falls (often backwards) General slowing Quiet voice Visual disturbances (gaze, blurring, double vision, difficulty reading) Cognitive changes behaviour, reduced social interaction Low mood, apathy, anxiety, fatigue Positive applause sign shows subcortical cognitive dysfunction Difficulty imitating postures (ideomotor apraxia) & pantomiming patterns of limb movements (ideational apraxia)

5 Early Stage Intervention in PSP Early access to MDT Assessment; transfers; gait; falls management; exercise Appointment of & access to a keyworker Counselling/support Care Needs Assessment Social & financial issues and support Regular review Information about being involved in research Outcomes Consider outcome measures Reduction in distress & acceptance of diagnosis Support for person with PSP/CBD and carer/family Quality of life

6 Mid-Stage Symptoms in PSP Frequent falls (often backwards) Rigidity Bradyphrenia Emotional & behavioural changes - recklessness Visual problems blepharospasm Swallowing problems & risk of choking Communication difficulties reduced speech, echolalia Constipation Sleep disorders Fatigue Pain

7 Mid-stage Intervention in PSP Re-assessment of symptoms, impairments & disabilities Risk assessment for impulsive behaviour Access to MDT & social services Transfers, gait, pain, falls management Equipment (caution!) Signposting Outcomes Effective coordination of all services & professionals Prompt access to equipment Optimum symptoms control Clear goals of therapy & care, maximising independence, control & Quality of Life (consider outcome measures)

8 Cognition & Personality Changes in PSP Cognition Personality Slow executive function/cognitive processing Intact visual-spatial function Slow memory may need cueing to retrieve Reduced fluency Reduced emotional recognition and theory of mind Changes in personality Impulsive Withdrawn Reduced inhibition/reckless - leads to falls Short tempered Apathetic increases over course of disease Less likely to be agitated (3%) Depression in some Hallucinations

9 Advanced Stage Symptoms in PSP Reduced mobility or immobility Severe rigidity (especially neck & back) Transfer difficulties Weight loss Dementia Emotional/behavioural changes Severe eye movement problems Swallowing problems Severe communication difficulties Continence issues Sleep disorders Pain

10 Advanced Stage Intervention in PSP Access to MDT, community matron etc Management of symptoms, impairments & pain Ensure equipment/care support are in place & appropriate/effective Access to specialist palliative care as appropriate Facilitate symptom control Carer support Outcomes Maintenance of dignity & support in line with their needs/preferences Maintenance of autonomy as far as possible

11 End of Life Stage in PSP Symptoms Severe impairments & disabilities Rapid deterioration in condition Intervention Relieve distress Support for carer/family Outcomes Maintenance of dignity Symptom control Individual dies in preferred place

12 Symptoms of CBD Bradykinesia, rigidity, tremor (present for some),progressive oogait and balance disturbance Alien limb (50% of cases) complex unintentional movements of limb interfering with normal tasks Apraxia not knowing how to do something (e.g. pretend to brush teeth) Myoclonus Dystonia hands more than lower limbs (also causes pain) Allodynia (pain caused by something that wouldn t normally cause pain) Dysphagia and dysarthria Supranuclear gaze palsy & sometimes blepharospasm

13 Intervention: Think outside the box!

14 Cognitive & Personality Changes in CBD Cognition Word recall problems and difficulty using correct language to express themselves Poor short-term memory Executive dysfunction Obsessive Compulsive Disorder Personality Agitation Irritability Depression (73%) No hallucinations Apathy

15 What is your role: Red Flags PSP Early falls backwards Poor response to levodopa Mona Lisa stare - reduced blinking Messy Tie Sign (due to reduced downward gaze) Drunken sailor gait - clumsy and unsteady Rocket Sign -motor recklessness FIGS (Frequents falls; ineffective medication; gaze palsy; speech & swallow problems) (Cianci 2012) CBD Poor response to levodopa Dystonia Cognitive changes Dyspraxia Alien Hand syndrome

16 Framework for Physiotherapy Preserved Mobility Encourage activity/exercise/balance/strength/aerobic training Identify falls risk Impaired Mobility Encourage maintenance of activity/exercise adapt as required Manage/prevent falls Cues and strategies Optimise respiratory function Severely compromised mobility Transfers/ wheelchair assessment referral Positioning Respiratory care Physiotherapists_v1.2.pdf

17 O.T. Intervention STRATEGIES COMMUNICATION SUPPORT Role of the O.T: Problem Solver Educator Networker Supporter Enhance the quality of life and provide support

18 Strategies COGNITIVE STRATEGIES Education: Cognitive Strategies Break activities into components. Increase attention & concentration. STOP THINK PLAN DO

19 Case Study: Consider 1. Discuss what your intervention might include 2. Discuss what outcome measures might be useful 3. Discuss what outcomes you might expect

20 Take Home Message Be aware of the different stages of PSP/CBD and the therapy implications Recognise red flags Be aware of all disciplines and agencies available to provide support Understand the importance of communicating clearly with both patients and families

21 Communication Skills BENEFITS OF GOOD:- Effective communication produces a more effective consultation for both patient and Therapist Improves Health Outcomes for the Patients Bridges the Gap between evidence base and individual patients.

22 Communication Skills 2 IMPROVEMENTS:- Establish the patients perspectives and wishes and what is important to them. Ensure information is given in a flexible way and ensure the patient has understood.

23 Communication Skills 3 BARRIERS Fears Beliefs and Attitudes Lack of Skills Work Environment Blocking Behaviours.

24 Communication Skills 4 FACILITATION SKILLS Build a rapport, gather information, give information and negotiate decision making. Non-verbal Skills: body language, eye contact and touch Questioning: open, directive, psychological aspect, clarification, exploration and negotiation. Verbal Skills: reflection, paraphrasing, empathy, pauses/silence and summarising Cues: something the patient says or does that hints of something more to be explored.

25 Support Explore everything that is available both locally and nationally to provides support and information to the patient and carer. Lewy Body Association PSP Association MSA Society Parkinson s UK Alzheimers Society Carers groups Social Services District Nurses Continuing care

26 Advanced Care Planning Advanced Statement:- Informally written information about wishes Advanced Decision re Refusal of treatment: should be signed and witnessed. DNA CPR Power of Attorney: Someone to make decisions when capacity is an issue Advanced Care Plan:- Formal written document but can be reviewed regularly and changed if needed. Summary Care Record:- Health records detailing medications etc.

27 References Brooks D. Diagnosis & Management of Atypical Parkinsonian Syndromes. J. Nueurol Neurosurgery Psychiatry 2002;72 (Supple1):10-16 Golbe LI, Davis PH, Schoenberg BS, Duvoisin RC. Prevalence and natural history of progressive supranuclear palsy. Neurology 1988;38: Goetz CG, Leurgans S, Lang AE, Litvan I. Progression of gait, speech & swallowing deficits in PSP. Neurol Mar 25;60(6):9:17-22 Kompoliti K, Goetz CG et al. Clinical presentation and pharmacological therapy in CBD. Arch Neurol 1998;55(7): Lindop F, Brown L, Graziano M, Jones D. Atypical Parkinsonism: Making the case for a neuropalliative rehabilitation approach. Int. Journ Therapy & Rehab Vol 21(4): Nieforth KA, Golbe LI. Retrospective study of drug response in 87 patients with PSP. Clin Neuropharmacol 1993;16(4): Rittman T. Rowe J. What s new in Progressive Supranuclear Palsy? ACNR 2012;11 (6) Jan/Feb:8-10 Stamelou M. Current Treatments for MSA, PSP and CBS. Movement Disorders Teaching Course 2012;.4308, June 20: 49-55

28 References 2 Best Practice in PSP Practice-web.pdf Pathway of Care for PSP: a guide for Health and social; care professionals Lord S, Mhiripiri D. Guide to multiple System Atrophy for Physiotherapists Guide to PSP & CBD for general practitioners and the primary healthcare team Winter Y et al. Health related quality of life in MSA and PSP. Neurodegen.Dis 2011;8(6):438-46

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